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Feeling downtrodden today, but I need your help to get back up!

My mom is a member of the Los Angeles Pink Dragons, a dragon boat racing team of breast cancer survivors. She has been paddling with the Pinks for about a year now. Last night, one of her teammates passed away after a long battle with breast cancer. Frances was my mom’s benchmate on the boat. On the Pink Dragons’ Facebook page, Mom writes: “Frances, your courage and determination was an inspiration to all of us. Your teammates will miss you so. Rest in peace, dear friend.”

Then scrolling down through my Facebook newsfeed, I was accosted by another heartwrenching message, this one from Bright Pink founder Lindsay Avner: “My heart breaks upon learning of the loss of Rebecca, a member of the Bright Pink Vermont family, who lost her battle to breast cancer at only 29 years old.”

29 years old.

Frances and Rebecca’s deaths are just two of many breast cancer-related losses I often hear about, but the news NEVER gets easier to swallow. Frances could have been my mother; Rebecca could have been me. I thank my lucky stars that my mother and I are both healthy and thriving, but two families are hurting right now, and though I did not personally know either woman, I am hurting, too.

These amazing women did not have the chance that I had to say “NO WAY” to breast cancer before it could come knocking. My BRCA mutation robbed me of a lot: the ability to be carefree, the trust I had in my body, and of course, my breasts. But it gave me something too: the chance to save my own life.

I’m a previvor. I survived my predisposition to breast cancer. If you’ve been following my blog, you know it hasn’t been an easy road to walk. I would not wish it upon anyone, especially a young woman like me. But it was necessary.

As more women learn about the BRCA mutations (and other rare genetic mutations linked to breast cancer), they are faced with the difficult decision to undergo prophylactic surgeries. They have questions. They have concerns. They are scared. And sometimes, they feel like they have no where to go, because there is no one who understands.

There is, though. There is a whole community who understands–you just have to turn on a computer.

Yesterday, Emperor Zuckerberg and his droids over at Facebook shut down part of that community. Young Previvors was a group of nearly 200 women just like me. It was a safe haven away from judgment and fear where high-risk women could ask questions, voice concerns and share stories of hope.

Young Previvors helped me when I was initially shocked by the unevenness of my new silicone implants. I shared my photo, and was soothed by the outpouring of support from women who had over time seen improvement in their own implants.

I helped women on Young Previvors, too. I described the early signs of my cellulitis infection and how I finally got my Jackson-Pratt drains taken out. I reached out to other young women, college students who were just learning about their cancer risk.

Now we need your help.

We don’t know why Facebook shut down Young Previvors. The group was not at all public; on the contrary, the privacy settings were very intense and all members were pre-screened by the group founder/moderator. Only group members could view posts from Young Previvors.

We hope that these efforts from the public will show the people over at Facebook that this group is crucial. Isn’t the point of social networking to connect, to form a community? We did that. Why did Facebook punish us?

If just one young women like me does not find the support she needs because Young Previvors is gone, then it will be a huge loss.

Thank you so much for your help. I will keep you all updated on the progress of the group’s restoration.

8 thoughts on “Feeling downtrodden today, but I need your help to get back up!”

Thank you, Rachel, for honoring my teammate in your post. It eases my burden of sadness to know that others feel that same sorrow. My heart goes out to the family and friends of the young woman in Vermont who lost her battle at such a tender age. Yet, I’m so encouraged that you young previvors are reaching out and banding together to support each other through your challenges and to take every action you can to change what used to be considered “destiny.”

Reblogged this on beatingcowdens and commented:
Sometimes you read a story that just needs to be retold.

This link will take you to the world of a young lady I “met” through my blog and have come to respect.

She does not share my same genetic mutation, hers is the BRA-CA gene, and mine is PTEN. But the breast cancer risks are ridiculous for both, and she bravely as a young twenty something, underwent a prophylactic bilateral mastectomy.

In a rare request, she is asking for help, and I certainly feel compelled to share her reasonable request.

It is through social media that I have come to find others “like us,” to share mine and Meghan’s story of our Cowden’s Syndrome battle. Without that outlet, I would feel incredibly lonely.

Please take a moment to read Rachel’s story, and another to respond to her request.

This world of genetic predisposition is terrifying, and should not be traveled alone.

Thank you for your blog!!! While I have not been diagnosed with the BRCA gene (I have never been tested as I don’t have a family history) I am a 42 year old woman who has had 5 lumpectomies and two cyst aspirated in the last fifteen years…the majority of which all came back with some form a precancerous cells. I recently had my second MRI which found another lump “which appears to be benign”…however, I have decided this is it for me and am planning to pursue a prophylactic mastectomy. I have spent all evening researching what this means…pre-surgery, post-surgery, lifelong, etc. Everything was “medical” and what I already knew from researching this a few years ago. Your blog enlightened me and honestly frightened me a little, but ultimately reaffirmed my decision. I know I’m struggling with the decision at 42…I can believe having to make is at 21. Thank you for being willing to be so honest and share your experiences. To keep my spirits up I choose to focus on the end result…the ability to relax and…well lets be honest…having the boobs I’ve always wanted and for them to be a little perkier…which is what all “older” women want…and insurance will cover it!!! Again, thank you…reading your experience was just what I needed.